Methods: Within an integrated healthcare delivery system, women with a history of gestational diabetes participated in 1 of 6 ethnic-specific focus groups to elicit diverse perspectives and a survey yielding quantitative data to contextualize qualitative responses.

Conclusions: Patient reactions highlight the challenges of leveraging EHRs for tailored messages. Some viewed messages as caring reminders to take preventive action and others raised concerns over intrusiveness. Optimal lifestyle program outreach to improve quality of care for women at high risk for diabetes may require communication from personal physicians, careful development to mitigate concerns over privacy and authenticity, and techniques to counteract the threatening nature of personalized risk communication.

Themes from focus group discussions included opposing attitudes about whether to feature diabetes risk factors, how and whether patient data should be accessed, and perceived authenticity of tailored messages.

Participants consistently preferred messages sent by a personal physician.

Optimal outreach may require communication from personal physicians, addressing concerns over privacy and authenticity and mitigating the threatening nature of personalized risk communication.

Lifestyle programs, or behavioral interventions for weight management, healthy eating, and physical activity, can prevent type 2 diabetes (T2D)1,2 and are recommended for high-risk adults.3-5 Such programs are offered by healthcare delivery systems, yet little consensus exists on strategies to enhance patient engagement. Expanding the modest uptake observed in large health systems6,7 could further increase the programs’ public health impact. These programs are particularly vital for women with a history of gestational diabetes mellitus (GDM). Despite high rates of progression from GDM to T2D,8 many women may not appreciate this risk9 and healthcare providers may be unaware of patients’ GDM history due to fragmented care. Such factors potentially influence low program uptake in this high-risk population. Of further concern, considering racial/ethnic disparities in GDM10 and progression to T2D,11 minority participation in lifestyle programs appears low12,13 and minorities appear less likely to use recommended approaches to lifestyle changes.14-16

Electronic health records (EHRs) present opportunities to promote lifestyle programs using tailored messages. In contrast to broad patient outreach, tailored outreach—using messages with content personalized to an individual patient based on demographic, behavioral, and/or theoretical constructs17—is a well-established, theory-based strategy for increasing the persuasiveness,17 appeal,18-20 and effectiveness21 of health communications, which may also foster meaningful use of EHRs.22,23 For example, beyond identifying recipients for a given message, patient-level EHR data could be used to personalize the content of that message (eg, by referencing a specific patient’s combination of disease risk factors).

Automated tailoring has potential as a cost-effective strategy that can be delivered consistently in large health systems, which are key advantages given the potential expense of recruiting eligible patients to available programs.4 Still, concerns about privacy call for caution.24 Furthermore, tailored content in messages inviting participation in a lifestyle program could backfire by linking key aspects of the self to negative disease states,25,26 resulting in defensive resistance and dismissal of threatening information.25,27,28 Patient input is thus critical to inform implementation.

Given gaps in the patient engagement literature, we examined perspectives on tailored outreach messages encouraging women at high risk for T2D to participate in health system-based lifestyle programs. We took a mixed-methods approach to obtain more comprehensive patient perspectives29 and inform future research to disseminate evidence-based lifestyle interventions.30

METHODS

Design

Using a convergent mixed methods design, in 2015, we collected qualitative data via focus groups and quantitative data via survey. Quantitative data served to describe the sample and contextualize focus group responses.

Setting

Kaiser Permanente Northern California (KPNC) is a large integrated healthcare delivery system serving 3.7 million members who are demographically similar to the underlying population, except at the extremes of income and education.31

Participants

The sampling frame consisted of nearly all women diagnosed with GDM in 2011 to 2012 across 44 KPNC medical facilities. These women were previously identified as part of Gestational Diabetes’ Effects on Moms (GEM), a pragmatic cluster randomized clinical trial comparing postpartum T2D prevention strategies. Cluster randomization at the facility level had assigned women to usual care or a 13-session postpartum lifestyle intervention offered as optional routine care on behalf of the health system.32,33 Here, we used stratified sampling within the GEM cohort to identify women from 6 ethnic groups representative of northern California and among those with the highest prevalence and/or absolute frequencies of GDM.10 Eligibility criteria included being aged 18 to 50 years; comfort reading and speaking English; not currently pregnant; absence of recognized overt diabetes, confirmed by the KPNC diabetes registry34 and self-report; and body mass index (BMI) of 25 to 40 kg/m2 among African American, Mexican American, and non-Hispanic white women and 23 to 40 kg/m2 among Asian Indian, Chinese American, and Filipina women who are at greater risk for diabetes at a lower BMI.35

Procedure

Recruitment included a letter/e-mail followed by telephone invitation and a $40 incentive. Participants provided written or verbal consent, including permission to link data with GEM. Both studies were approved by the KPNC Institutional Review Board.

Data Collection

Quantitative. Self-reported demographic characteristics, participation in a health system-based lifestyle program in the last 6 months (yes/no), and likelihood of participating in the next 6 months (on a 4-point scale ranging from very likely to very unlikely) were assessed using single items. Patient trust in the medical profession was assessed using a validated 5-item questionnaire; summed responses on a 5-point scale range from 5 to 25, with higher scores indicating greater trust.36 Perceived risk for developing diabetes in the next 10 years was assessed using an item originally derived from the validated Risk Perception Survey for Developing Diabetes (RPS-DD).37 Responses on this 4-point scale range from almost no chance to high chance, with higher scores indicating greater perceived risk. Personal control over developing diabetes was assessed using a 4-item RPS-DD subscale. Averaged responses on a 4-point scale range from 1 to 4, with higher scores indicating greater control. Data from GEM included time elapsed since delivery of the index GDM pregnancy, GEM condition assignment (ie, being in a facility assigned to usual care vs intervention), and whether women in facilities assigned to the GEM intervention had participated in at least 1 session.32

Qualitative. Focus group methods were explicitly chosen to elicit an array of ideas among participants from diverse backgrounds. Rather than interpreting results as confirming consensus or strength of endorsement of specific ideas, qualitative themes can suggest topics for future hypothesis-testing research.

Two researchers co-moderated 6 ethnic-specific focus groups among African American, Asian Indian, Chinese American, Filipina, Mexican American, and non-Hispanic white women. We conducted 1 group in person and 5 via Web-enabled conference calls to maximize participation across a large geographical area. A standardized semi-structured interview protocol using the same moderator prompts38 and predetermined open-ended questions enhanced consistency, neutrality, and comparability of responses across groups.39 Key questions explored outreach message content that would help women decide whether to participate in a lifestyle program and the acceptability of individually tailored messages using EHR data. As a sub-section of the latter topic, participants were asked about the message sender and inclusion of personal diabetes risk factors available in EHRs: history of GDM, blood glucose laboratory results, weight status, and ethnicity (for racial/ethnic minority women). To facilitate discussion, participants were asked about their reactions to a 280-word hypothetical tailored message addressed to a fictional patient that referenced the personal risk factors previously noted; the message was purportedly co-signed by the clinical director of a lifestyle program and department chief of obstetrics/gynecology, and delivered via secure e-mail. Focus groups were digitally recorded and professionally transcribed, verbatim.

Analyses

Quantitative data were analyzed using SAS 9.3 software (SAS Institute Inc; Cary, North Carolina). We tested for group differences in patient trust, perceived risk for diabetes, and personal control using relevant tests for small sample sizes (eg, Kruskal-Wallis and Fisher’s exact tests). Qualitative data were analyzed using NVivo 10 software (QSR Intl Pty Ltd; Doncaster, Australia) and thematic analysis40 to inductively and deductively derive themes from the data.41 A doctoral-level clinical psychologist and master’s-level researcher reviewed all transcripts to develop a coding scheme of broad meaningful themes. One researcher independently coded transcripts; 2 researchers together then reviewed all coded text and selected key quotes, with discrepancies resolved by consensus. Finally, we integrated quantitative and qualitative data by creating joint displays.42

RESULTS

Sample Characteristics

Recruited participants (N = 35) had a mean age of 36 years (standard deviation [SD] = 5.3) and were a mean of 3.6 (SD = 0.3) years postpartum from their index GDM pregnancy. As designed, the sample was ethnically diverse (Table 1). Mean patient trust in the medical profession was 16.6 (SD = 3.8). Regarding perceived risk, 17% (n = 6) believed they had a high chance of developing diabetes, 29% (n = 10) a moderate chance, 49% (n = 17) a slight chance, and 6% (n = 2) almost no chance. Mean personal control over developing diabetes was 3.4 (SD = 0.5). Whereas 6% (n = 2) reported participating in a health system-based lifestyle program in the last 6 months, many endorsed intentions for the next 6 months, with 69% (n = 24) somewhat or very likely and 31% (n = 11) somewhat or very unlikely to participate. There were no significant differences across focus groups in any of the above domains (P ≥.07). Of 17 women in facilities assigned to the GEM intervention, 88% (n = 15) had participated in at least 1 session; participation was 50% among Filipina women (n = 2/4) and 100% within all other groups.

Qualitative Findings

Six broad themes emerged regarding tailored content in outreach messages, encompassing preferences and concerns. Sample quotes and the focus groups in which each theme emerged appear in Table 2.

Privacy. According to one perspective, tailored messages are acceptable and nonintrusive—as long as they are sent securely, by their personal physician, and/or within the boundaries of the health system. As one participant described tensions related to privacy:

“…to sort of pinpoint the people that would most benefit from a [program]…the only way to do that is to get some of that information together about the different people to see who would be the ones that would benefit the most. So, I understand that it’s sort of a really tricky balance between that privacy, but also establishing the access to these programs…it’s a very tricky balance because sometimes those of us who need it most aren’t that quick…to go and get that help.”

Concerns over privacy included wariness about the number of people who might have access to one’s medical records; still, participants acknowledged the advantages of such broad access (eg, the ability to receive integrated care from multiple providers).